The problem with racebased medicine Dorothy Roberts

15 years ago, I volunteered
to participate in a research study

that involved a genetic test.

When I arrived at the clinic to be tested,

I was handed a questionnaire.

One of the very first questions
asked me to check a box for my race:

White, black, Asian, or Native American.

I wasn’t quite sure
how to answer the question.

Was it aimed at measuring the diversity

of research participants'
social backgrounds?

In that case, I would answer
with my social identity,

and check the box for “black.”

But what if the researchers
were interested in investigating

some association between ancestry
and the risk for certain genetic traits?

In that case, wouldn’t they want to know
something about my ancestry,

which is just as much European as African?

And how could they make
scientific findings about my genes

if I put down my social identity
as a black woman?

After all, I consider myself
a black woman with a white father

rather than a white woman
with a black mother

entirely for social reasons.

Which racial identity I check

has nothing to do with my genes.

Well, despite the obvious
importance of this question

to the study’s scientific validity,

I was told, “Don’t worry about it,

just put down however
you identify yourself.”

So I check “black,”

but I had no confidence
in the results of a study

that treated a critical variable
so unscientifically.

That personal experience
with the use of race in genetic testing

got me thinking:

Where else in medicine is race used
to make false biological predictions?

Well, I found out that race runs deeply
throughout all of medical practice.

It shapes physicians' diagnoses,

measurements, treatments,

prescriptions,

even the very definition of diseases.

And the more I found out,
the more disturbed I became.

Sociologists like me have long explained

that race is a social construction.

When we identify people as black,
white, Asian, Native American, Latina,

we’re referring to social groupings

with made up demarcations
that have changed over time

and vary around the world.

As a legal scholar, I’ve also studied

how lawmakers, not biologists,

have invented the legal
definitions of races.

And it’s not just the view
of social scientists.

You remember when the map
of the human genome

was unveiled at a White House
ceremony in June 2000?

President Bill Clinton famously declared,

“I believe one of the great truths

to emerge from this triumphant expedition

inside the human genome

is that in genetic terms,

human beings, regardless of race,

are more than 99.9 percent the same.”

And he might have added

that that less than one percent
of genetic difference

doesn’t fall into racial boxes.

Francis Collins, who led
the Human Genome Project

and now heads NIH,

echoed President Clinton.

“I am happy that today,

the only race we’re talking about
is the human race.”

Doctors are supposed to practice
evidence-based medicine,

and they’re increasingly called
to join the genomic revolution.

But their habit of treating patients
by race lags far behind.

Take the estimate

of glomerular filtration rate, or GFR.

Doctors routinely interpret GFR,

this important indicator
of kidney function, by race.

As you can see in this lab test,

the exact same creatinine level,

the concentration
in the blood of the patient,

automatically produces
a different GFR estimate

depending on whether or not
the patient is African-American.

Why?

I’ve been told it’s based on an assumption

that African-Americans
have more muscle mass

than people of other races.

But what sense does it make

for a doctor to automatically assume

I have more muscle mass
than that female bodybuilder?

Wouldn’t it be far more accurate
and evidence-based

to determine the muscle mass
of individual patients

just by looking at them?

Well, doctors tell me
they’re using race as a shortcut.

It’s a crude but convenient proxy

for more important factors,
like muscle mass,

enzyme level, genetic traits

they just don’t have time to look for.

But race is a bad proxy.

In many cases, race adds
no relevant information at all.

It’s just a distraction.

But race also tends to overwhelm
the clinical measures.

It blinds doctors to patients' symptoms,

family illnesses,

their history, their own illnesses
they might have –

all more evidence-based
than the patient’s race.

Race can’t substitute
for these important clinical measures

without sacrificing patient well-being.

Doctors also tell me
race is just one of many factors

they take into account,

but there are numerous medical tests,

like the GFR,

that use race categorically

to treat black, white,
Asian patients differently

just because of their race.

Race medicine also leaves
patients of color especially vulnerable

to harmful biases and stereotypes.

Black and Latino patients
are twice as likely

to receive no pain medication as whites

for the same painful long bone fractures

because of stereotypes

that black and brown people
feel less pain,

exaggerate their pain,

and are predisposed to drug addiction.

The Food and Drug Administration has even
approved a race-specific medicine.

It’s a pill called BiDil

to treat heart failure in self-identified
African-American patients.

A cardiologist developed this drug
without regard to race or genetics,

but it became convenient

for commercial reasons

to market the drug to black patients.

The FDA then allowed

the company, the drug company,

to test the efficacy in a clinical trial

that only included
African-American subjects.

It speculated

that race stood in as a proxy
for some unknown genetic factor

that affects heart disease

or response to drugs.

But think about
the dangerous message it sent,

that black people’s bodies
are so substandard,

a drug tested in them

is not guaranteed
to work in other patients.

In the end, the drug company’s
marketing scheme failed.

For one thing, black patients
were understandably wary

of using a drug just for black people.

One elderly black woman stood up
in a community meeting and shouted,

“Give me what the white
people are taking!”

(Laughter)

And if you find race-specific
medicine surprising,

wait until you learn

that many doctors in the United States

still use an updated version

of a diagnostic tool

that was developed by a physician
during the slavery era,

a diagnostic tool that is tightly linked

to justifications for slavery.

Dr. Samuel Cartwright graduated

from the University
of Pennsylvania Medical School.

He practiced in the Deep South
before the Civil War,

and he was a well-known expert
on what was then called “Negro medicine.”

He promoted the racial concept of disease,

that people of different races
suffer from different diseases

and experience
common diseases differently.

Cartwright argued in the 1850s

that slavery was beneficial
for black people

for medical reasons.

He claimed that because black people
have lower lung capacity than whites,

forced labor was good for them.

He wrote in a medical journal,

“It is the red vital blood
sent to the brain

that liberates their minds
when under the white man’s control,

and it is the want of sufficiency
of red vital blood

that chains their minds to ignorance
and barbarism when in freedom.”

To support this theory,
Cartwright helped to perfect

a medical device for measuring breathing
called the spirometer

to show the presumed deficiency
in black people’s lungs.

Today, doctors still
uphold Cartwright’s claim

the black people as a race

have lower lung capacity
than white people.

Some even use a modern day spirometer

that actually has a button labeled “race”

so the machine adjusts the measurement

for each patient
according to his or her race.

It’s a well-known function
called “correcting for race.”

The problem with race medicine
extends far beyond misdiagnosing patients.

Its focus on innate
racial differences in disease

diverts attention and resources

from the social determinants

that cause appalling
racial gaps in health:

lack of access
to high-quality medical care;

food deserts in poor neighborhoods;

exposure to environmental toxins;

high rates of incarceration;

and experiencing the stress
of racial discrimination.

You see, race is not a biological category

that naturally produces
these health disparities

because of genetic difference.

Race is a social category

that has staggering
biological consequences,

but because of the impact
of social inequality on people’s health.

Yet race medicine pretends
the answer to these gaps in health

can be found in a race-specific pill.

It’s much easier and more lucrative

to market a technological fix

for these gaps in health

than to deal with the structural
inequities that produce them.

The reason I’m so passionate
about ending race medicine

isn’t just because it’s bad medicine.

I’m also on this mission

because the way doctors practice medicine

continues to promote
a false and toxic view of humanity.

Despite the many visionary breakthroughs
in medicine we’ve been learning about,

there’s a failure of imagination

when it comes to race.

Would you imagine with me, just a moment:

What would happen if doctors
stopped treating patients by race?

Suppose they rejected

an 18th-century classification system

and incorporated instead
the most advanced knowledge

of human genetic diversity and unity,

that human beings cannot be categorized
into biological races?

What if, instead of using race
as a crude proxy

for some more important factor,

doctors actually investigated
and addressed that more important factor?

What if doctors joined the forefront

of a movement to end
the structural inequities

caused by racism,

not by genetic difference?

Race medicine is bad medicine,

it’s poor science

and it’s a false
interpretation of humanity.

It is more urgent than ever

to finally abandon this backward legacy

and to affirm our common humanity

by ending the social inequalities
that truly divide us.

Thank you.

(Applause)

Thank you. Thanks.

Thank you.

15 年前,我
自愿参加了

一项涉及基因测试的研究。

当我到达诊所接受检测时,

我收到了一份问卷。

第一个问题
要求我为我的种族勾选一个框:

白人、黑人、亚洲人或美洲原住民。

我不太确定
如何回答这个问题。

是否旨在

衡量研究参与者
社会背景的多样性?

在这种情况下,我会
用我的社会身份来回答,

并勾选“黑色”复选框。

但是,如果研究
人员有兴趣调查

祖先
与某些遗传特征风险之间的某种关联呢?

在那种情况下,他们难道不想
了解我的

血统吗?既是欧洲人又是非洲人?

如果我放下自己作为黑人女性的社会身份,他们怎么能
对我的基因做出科学发现

毕竟,完全出于社会原因,我认为自己
是一个有白人父亲的黑人女性,

而不是一个有黑人母亲的白人女性

我检查的种族身份

与我的基因无关。

好吧,尽管
这个问题

对研究的科学有效性有明显的重要性,但

我被告知,“别担心,

只要放下
你的身份就行了。”

所以我检查了“黑色”,

但我对
一项如此不科学地处理关键变量的研究结果没有信心

在基因测试中使用种族的亲身经历

让我思考:

医学上还有什么地方可以用种族
来做出错误的生物学预测?

好吧,我发现种族在
整个医疗实践中都存在。

它塑造了医生的诊断、

测量、治疗、

处方,

甚至是疾病的定义。

我发现的越多,
我就越不安。

像我这样的社会学家早就解释

说,种族是一种社会建构。

当我们将人识别为黑人、
白人、亚洲人、美洲原住民、拉丁裔时,

我们指的是社会群体,这些群体

的界限
随着时间的推移

而变化,在世界各地也有所不同。

作为一名法律学者,我还研究

了立法者而非生物学家是

如何发明种族的法律
定义的。

这不仅仅是
社会科学家的观点。

您还记得

2000 年 6 月在白宫仪式上公布人类基因组图谱的时候吗?

比尔·克林顿总统有句名言:

“我相信,

从这次

人类基因组内的胜利探险中得出的一个伟大真理

是,在基因方面,

人类,无论种族,

99.9% 以上都是相同的。”

他可能会补充

说,不到百分之一
的遗传差异

不属于种族盒子。

领导人类基因组计划

、现任 NIH 负责人的弗朗西斯·柯林斯

与克林顿总统相呼应。

“我很高兴今天,

我们谈论的唯一种族
是人类。”

医生应该从事
循证医学

,他们越来越多地被
要求加入基因组革命。

但他们按种族对待病人的习惯
远远落后。

估算肾小球滤过率或 GFR。

医生通常会按种族解释 GFR,


是肾功能的重要指标。

正如您在此实验室测试中所见

,完全相同的肌酐水平,


患者血液中的浓度,会根据患者是否为非裔美国人而

自动
产生不同的 GFR 估计值

为什么?

有人告诉我,这是基于

非裔
美国人的肌肉质量

比其他种族的人多的假设。

但是

,医生自动假设

我的肌肉
量比那个女性健美运动员多,这有什么意义呢? 仅仅通过观察来确定个体患者的肌肉质量

不是更加准确
和循证

吗?

好吧,医生告诉我
他们正在使用种族作为捷径。

它是更重要因素的粗略但方便的代表


例如肌肉质量、

酶水平、

他们只是没有时间寻找的遗传特征。

但是种族是一个不好的代理。

在许多情况下,种族
根本没有添加任何相关信息。

这只是一种分心。

但种族也往往
压倒临床措施。

它使医生对患者的症状、

家庭疾病、

他们的病史、他们自己可能患有的疾病视而不见
——

所有这些
都比患者的种族更有根据。

种族不能

不牺牲患者健康的情况下替代这些重要的临床措施。

医生还告诉我,
种族只是他们考虑的众多因素之一

但是有许多医学测试,

比如 GFR,仅仅因为他们的种族,就

明确地使用种族

来区别对待黑人、白人、
亚洲患者

种族医学还使
有色人种患者特别容易

受到有害偏见和刻板印象的影响。

黑人和拉丁裔患者因同样疼痛的长骨骨折而

没有接受止痛药的可能性是白人的两倍,

因为刻板印象

认为黑人和棕色人种
感觉较少疼痛、

夸大疼痛

并且容易吸毒。

美国食品药品监督管理局甚至
批准了一种针对种族的药物。

这是一种名为 BiDil 的药丸,

用于治疗自称
非裔美国患者的心力衰竭。

一位心脏病专家在
不考虑种族或基因的情况下开发了这种药物,

出于商业原因,

将这种药物推销给黑人患者变得很方便。

然后,FDA 允许

这家制药公司

在一项仅包括非裔美国人受试者的临床试验中测试疗效

推测种族代表了

一些影响心脏病

或对药物反应的未知遗传因素。

但是想想
它发出的危险信息

,黑人的
身体太不合格了,

在他们身上测试过的药物

并不能保证
对其他病人有效。

最终,这家制药公司的
营销计划失败了。

一方面,黑人
患者对

只为黑人使用药物持谨慎态度是可以理解的。

一位年长的黑人妇女
在社区会议上站起来大喊:

“给我
白人正在吃的东西!”

(笑声

) 如果你发现种族特异性
药物令人惊讶,

等到你知道

美国的许多医生

仍在使用

由奴隶制时代的医生开发的诊断工具的更新版本

这种诊断工具严格 与

奴隶制的正当理由有关。

Samuel Cartwright 博士毕业于

宾夕法尼亚大学医学院。 内战前

他在南方

腹地行医,是当时被称为“黑人医学”的著名专家。

他提倡疾病的种族观念,

即不同种族的人
患有不同的疾病

,对
常见疾病的体验也不同。

卡特赖特在 1850 年代辩称,出于医疗原因

,奴隶制对黑人有益

他声称,由于黑人
的肺活量低于白人,

强迫劳动对他们有好处。

他在医学杂志上写道:

“在白人的控制下,是
输送到大脑

的红色生命血液解放了他们的思想
,而在白人控制下

,正是缺乏足够
的红色生命血液

将他们的思想束缚在无知
和野蛮之中。 自由。”

为了支持这一理论,
卡特赖特帮助完善

了一种称为肺活量计的用于测量呼吸的医疗设备,

以显示
黑人肺部的假定缺陷。

今天,医生仍然
坚持卡特赖特的

说法,黑人作为一个种族

的肺活量
低于白人。

有些人甚至使用现代肺活量计

,它实际上有一个标有“种族”的按钮,

因此机器可以根据

每个患者
的种族调整测量值。

这是一个众所周知的功能,
称为“种族校正”。

种族医学的问题
远不止误诊患者。

它对
疾病的先天种族差异的

关注转移了注意力和资源

导致可怕的
种族健康差距的社会决定因素:

缺乏高质量的医疗保健;

贫困社区的食物沙漠;

暴露于环境毒素;

监禁率高;

并经历
种族歧视的压力。

你看,种族不是一个由于基因差异

而自然产生
这些健康差异的生物类别

种族是一个

具有惊人
生物学后果的社会类别,

但由于
社会不平等对人们健康的影响。

然而,种族医学假装

可以在针对种族的药丸中找到这些健康差距的答案。

为这些健康差距推销技术解决方案

比处理
产生这些差距的结构性不平等要容易得多,也更有利可图。

我如此
热衷于结束种族医学

的原因不仅仅是因为它是坏药。

我也在执行这个任务,

因为医生行医的方式

继续
宣扬错误和有毒的人性观。

尽管
我们一直在学习医学上

有许多有远见的突破,但

在种族方面却缺乏想象力。

你能和我一起想象一下:

如果医生
停止按种族对待病人会发生什么?

假设他们拒绝

了 18 世纪的分类系统

,而是纳入

了人类遗传多样性和统一性的最先进知识,

即人类不能被归类
为生物种族?

如果医生不是将种族

用作某些更重要因素的粗略代理,而是

实际调查
并解决了那个更重要的因素怎么办?

如果医生加入运动的最

前沿,以结束

由种族主义

而非遗传差异引起的结构性不平等怎么办?

种族医学是坏药,

它是糟糕的科学

,是
对人性的错误解释。

最终放弃这一落后的遗产

,通过结束真正分裂我们的社会不平等来肯定我们共同的人性

,比以往任何时候都更加紧迫

谢谢你。

(掌声)

谢谢。 谢谢。

谢谢你。